Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living through it. All welcome jump in and feel supported

Thanks @HerRoyalWitchyness and @Akire! Baby is 8 months old now! Finding chasing after His Crawliness really tough.

@RainbowZebraWarrior in a way I feel really "lucky" that what I have is so visible on imaging. I hate to see people getting fobbed off. I mean, if we take back pain as an example, only 20% of it is easily located on MRI, apparently. The other 80% are hardly imagining it!

I only find the TENS good when I have a trapped nerve affecting my hand, and it only works if I turn it up high enough my hand spasms. 😂 Probably a distraction more than anything. Totally agree on the £50 thing.

The codeine and alcohol concern is based on the fact that they're both sedating and together they can be more sedating than the sum of their parts. And falls risk. But they wouldn't make each other less effective, unless the sleepiness makes a person sleep in a dodgy position.

Thats what I did. It worked. Get funny looks, but I don't care 🤣

8m is hard age for your back! Still weigh a tonne but can’t pull themselves up so you can get them on lap. But guess that’s half pregnancy and then 8m in pain.

Thanks for drug advice do you know if the amount affect it or is it any possible amount. Or 30mg over the day just as bad as 240? Also if you can take every 4h is it all out your system in 4h? Sorry to abuse your medical training

@Akire consider it info rather than advice! Half life of codeine is about 3 hours. It gets converted to morphine in the body, but not in a 1:1 ratio (usually about 10%). So if a person takes 30mg, they'll have about 15mg in their body after 3 hours.

It can be taken at 60mg 4 times a day. Technically it can be taken every 4 hours, but that leaves a person without any for the remaining 8 hours. And the more that's used, the more addictive it is.

That makes some sense I know often I feel it affects more at 4/5/6 hour point so does that mean last few hours are stronger in bloodstream than first? I try only take once or twice a day at lowest rate I’m very aware of it’s addictive effects had family member who was addicted. But Gp quite firm this or nothing!

The first to middle few hours would usually be the most effective, but the body is a strange thing!

That’s certainly how my body seems operate thanks help cheer me up guys

Hope everyone had good evening. My bed has decided to ping the slats so I will have very uncomfortable night. So probable have do my back in tomorrow trying slowly pull mattress off inch by inch then have replace all slates as all attached together. One seems move tiny bit then all just fall in big hole next time you lean on that particular point. Don’t really have anyone else can ask and can’t fit under the bed try do it that way. Stupid ikea beds for you. Could really be doing without it where is nice strong man when you need one?

Oh bloody hell @Akire if you were closer I would have sent my DH round to fix. Do you know any of your neighbours?

Stressful day here. Poor little ivycat is poorly so second vets visit. DH is working for the next 9 days so had to Facebook beg for a friend to help. Thankfully my lovely boss lady from work offered. Poor puss cat is in so much pain. They have given her a steroid jab and a long acting antibiotic but if no improvement in next few days will need to go under anaesthetic for investigations.

Good those of you who don't know me very well yet ivycat is my saviour. She got me though a very dark period. She always knows when pain is bad or I'm feeling low and will refuse to leave my side.

In return I hold her like this when she isn't feeling well. (I lost feeling in my arm after two hours)

Glad you have a cat for support. Some days I think love a pet but trouble enough looking after myself and can’t be doing anyone else fed and keep clean. Hope she is on the mend now must be hard when cat can’t say what it wrong.

Bloody kids on landing are out on scooters. So 4 metres from my bed it’s same flooring so might as well be skating in my bedroom as 2 doors between us are rubbish wooden ones not sound proofed.

@SpookyScarySkeletons I'm so sorry your cat isn't feeling well. I have three cats and they're just wonderful creatures. 🐈‍⬛🐈‍⬛🐈

I've had a surprisingly good pain day. My back has been acting up, but arms and legs behaved once I clicked my ankles and wrists into a reasonable position.

I'm 55 with ME/CFS, Fibromyalgia, Arthritis, Peripheral Neuropathy & Endometriosis. My first thought in a morning is what hurts today, I'm just in the process of applying for an electric wheelchair, has anyone else gone through it & how long does it take?

Hi @Nat6999 you are very welcome. Are you applying via mobility scheme or local nhs wheelchair services? My local one will not give you an electric chair if you can self move in Manuel chair inside. Which stupid as that bears no relation to leaving the house for essential purposes. I can get around my flat just about it’s very tiring but I struggle to get down hallway open doors and even get to my lift never mind out of my street.

If you do pass think it’s quick once they have assessed you so maybe 6m wait to be seen then 3m them agree fund it and wait for delivery. But with covid who knows how long things are. It’s much faster and cheaper buy a simply one yourself if you have low needs or basic model no special supports or fancy things.

The mobility scheme also hire you one and take care of it but costs more in long run than buying yourself. I owned few myself then qualified for NHS. I am grateful but spent 5 weeks in august stuck at home waiting for new wheel and chair been waiting long term repair to position for over 2years. They said I need new one about 6m ago but waiting new assessment as they can’t fix it. Pro and cons of both systems.

I've got a Motability car so it will have to be through Wheelchair services, I would like a folding electric chair so I can use it with my car. I'm housebound at the moment, other than hospital appointments I haven't been out for nearly two years. I've lost the feeling in my legs & feet & have to manage with crutches, I can only manage to walk about 4 metres.

They don’t really supply folding ones where I am. The reason I haven't got a mobility car is with my electric chair it would need to be bigger vehicle larger deposit, a ramp that comes out automatically , then fittings to secure it to the floor then a swivel seat to get to drive or drive from chair (even bigger van) it would cost me £22k up front then the mobility payments. Then pay for it all come out upgrade and repeat every 5/6 years minus car depression costs.

If they do provide a folding one they do exist they are still quite heavy so mim 4 stone. The problem would be then mobility agreeing to getting a hoist fitted in your boot to lift it in and out. They may not allow or charge huge amount. Have you spoken to them first about this? Or do you also have someone who can lift a chair in and out the car every time you use it? And you are always a passenger?

NHS services will also only give you the lowest spec get away with so if the say yes you need one it be no singing dancing. Not trying to be negative here of course I wish you all the lucky. Hopefully you have all the answers to this already!

Minor win moment!

Neither of the teens will drag themselves out of their stinking pits so I have just managed to move my perching stool to the kitchen unit (honestly that took so much effort I had to take a breather!) and did all the chopping and prep for my slow cooker chicken casserole which is not happily cooking away until DH gets home! That's the most prepping and cooking I have managed for ages!

Such a div.....

NOW happily cooking away 🤦🏼‍♀️

That’s awful! What 1030/11 on Sunday is hardly crack of dawn asking them to move it for you. I used have perching stool but to heavy to be much good as you need keep moving it around kitchen and it takes up loads of room.

Being doing lots research into adenomyosis but found several threads on here when by time woman have waited ages to see a gynaecologist they said things like oh that only hurts when you have your period and the strongest painkillers for it supposed to be ibuprofen almost started a if you have been referred lately how long have you been waiting but not sure want to know. Pre covid even referring things as urgent still be good 6-12months. Feeling quite hopeless about it all to be honest.

As with most things women related it’s well we don’t really understand why that hurts, how it happens or have any drugs that are designed for this. Plus not once asked about sex life or pain bleeding which I gather is because I’m wheelchair user and people like me don’t do that sort thing! I mean it could all be a STI or pregnancy related pain but not once asked if I could be pregnant or about my sexual history. No one has examined since this all started (almost 2y ago) either!

Same when I’m at dentist and she wants to do X-ray think I’ve been asked once out of about 6 X-rays. Felt like saying after oh so it’s not going harm the baby then? They should ask al women same questions not assume some women are definitely not pregnant firsts. Rant over

That's good @SpookyScarySkeletons. I do like a casserole.

Anyone else here find a lot of the chronic pain info unrelatable? I don't catastrophise. I try to stay moving. I don't assume that every blip on an MRI is a disastrous disease.

Also, some resources advise distraction when your pain is more than 8/10 (which for me is contractions at the pushing stage of labour with a transverse-headed baby).

I'm not feeling entirely hopeless or anything. I'm not ignoring the fact that the pain can be worse when I'm tired/hungry/stressed. I do believe it can be dialled down. But some of the info out there is so patronising and gives me the rage.

(For background, a lot of my pain is immediately rectified by manipulating my joints, so I'm very lucky in that way. My back is not something this applies to, so it's much more annoying in that sense.)

Thank you for listening to my rant.

Only thing useful I’ve found is pain scales written by chronic pain users v normal
Pain scales. I’m calling my pain a 5 which sounds not bad but for me that means constant disturbing take breath away, just about manage with pain and procrastination to get yourself back forth from bed to bathroom and get food. The very basics and no more. Even watching TV is not enjoyable as to much pain to follow it.

Like you my 8 would be just about being able to breath not able move and getting through each minute at a time. My 9 is screaming and my 10 is hospital!

I know from peoples experience of chronic pain clinic seem to be if you don’t feel less pain by end it’s your fault. That if you can force yourself not to think about pain it becomes less and negative ideas just make it worse. If you distracted yourself with other stuff the pain would reduce. Think we all related to that for minor pain like headache or period pain where we can manage plough on wards for few hours but not same as like you saying having a baby 24/7!

@Akire

Glad you have a cat for support. Some days I think love a pet but trouble enough looking after myself and can’t be doing anyone else fed and keep clean. Hope she is on the mend now must be hard when cat can’t say what it wrong.

Bloody kids on landing are out on scooters. So 4 metres from my bed it’s same flooring so might as well be skating in my bedroom as 2 doors between us are rubbish wooden ones not sound proofed.

Two naughty cats!! The baby one (Betsy)is being very careful around Ivy today, usually she charges around trying to get ivy to chase her but she just keeps going over and doing a nose kiss, a gentle head bump and licking her head.

Can't whinge too much about the teens as they did help me do all the living room cleaning yesterday and eldest did the vet duties for me.

This is the pair of reprobates!!

@Akire exactly! Thankfully my pain specialist isn't pushing any of that info on me. He's prescribed better medication and booked me in for an epidural procedure. It's my own searching that brought me to the "forget about it and it'll go away" stuff, and honestly it all seems a bit gaslighty.

@SpookyScarySkeletons I love your reprobates.

My tens pen just arrived! Zapping away see if makes a difference. But instructions say only use same part 3/4 times a day?! Just done about 8 goes around pelvis to see which spot hits the mark.